I wrote this a few months ago, and the excellent Shoot up or Put up blog agreed tom post it there.
As part of me deciding I’m going to try making my blogs a bit more of a thing I thought I’d stick it up here as well.
I have been thinking a fair bit recently, and over the last few years, about how diabetes management interacts with mental health issues. I’ve been having issues with both, and have finally put thoughts into words. I feel that a warning is required, as this discussion of the interplay between my depression and diabetes includes several suicidal phases and self harm. Disordered eating may also feature, although I have discussed that before.
I’m also going to gloss over a lot of detail on the interpersonal relationships, as while connected, it’s not relevant. You can ask if you really want to know!
I’ve been a type-1 diabetic for 10 years now – having been diagnosed a month before my 21st birthday makes it easy to keep track of the slow yet inevitable march of time. I’ve had numerous flirtings with The Darkness (no, not the band, the euphemism for depression popularised by John Robins, do keep up!), but always under that crucial two-week period beyond which it is considered a problem.
That changed early in 2015 – arguably it was probably before that, but as so often with these things, it took someone else to point out to me that something was clearly up.
I was fortunate to be in the process of getting my first insulin pump, and was due a session with the clinical psychology team for acceptance therapy (which apparently I should have had at diagnosis, but the problems of knowing what help you’re supposed to get is a whole other subject). This meant that I was already booked into getting some help before I got too deep into the Darkness. The process of getting the pump was also a really useful short-medium term goal to keep me focused. Once that was over (successfully, yay!) in the summer, however, things took a significant downward turn.
I hit a real low, with pretty much constant suicidal thoughts. It made me painfully aware of the huge issue with suicidal ideation in men – apparently we tend to choose more ‘final’ methods than women – as all my plans involved multiple levels of ‘failsafes’. I feel that sharing details isn’t the best idea, so it’ll have to suffice to say that most/all plans involved an insulin overdose – and making use of my (then) shiny new pump.[A little aside about intentional insulin overdoses – don’t do it, kids! If it succeeds you’ll be making the world a sadder place (and it’s already pretty crappy, amiright?!) and if it fails you could be in a FAR worse situation than before. See here for a study into the matter, the key stat being that it’s 94.7% chance of complete recovery, and of the remaining 5.3% it’s 50:50 between death and permanent mental impairment.]
Fortunately, I was already seeing a psychologist regularly and had built up enough of a relationship that when she asked if I was having suicidal thoughts I discovered I couldn’t lie. Trying to find a way to make me safer was difficult, however, especially as my long term relationship was in the process of falling apart – leaving me living alone. How do you balance the danger of having access to potentially lethal medicine, the complete removal of which is itself deadly?
Initial thoughts from the professionals were that maybe the pump wasn’t right for me but, thankfully, the pump clinic team listened when I explained that the pump was the main (perhaps only?) reason I was even trying to manage my diabetes. I was struggling to care enough to type numbers into the pump – having to calculate the shot, find a needle, find the pen, do the clearance shot, dial in the correct dose, find a suitable spot and then finally stab myself and inject the insulin just felt like asking too much. My A1C might have been climbing but I was (and am) sure it would’ve been worse if I’d been on pens.
We settled on reducing the amount of insulin I had access to at any one time (in particular getting rid of the left over lantus from before I went on the pump), and as my HbA1C was pretty awful they also put me on a mixed pump and pens care plan (well, I suggested it as a compromise, and they agreed to try it) – so I do a basal shot of degludec (also known as Tresiba) with a pen, but all my boluses are via my pump. This stops them worrying about my pump going wrong and me not caring enough to fix it, which was of particular concern as they had had one or two deaths in the preceding year due to pump issues.
And that is fundamentally where I’ve been for the last three years.
There’s been ups and downs, and I have no doubt that my poor control hasn’t helped my recovery, but my poor mood has definitely impacted my control. Comfort eating isn’t best practice for a diabetic, after all. Though woe betide any fool that tries to take my biscuits away from me!
Another piece of technology I have to thank for helping me maintain *some* level of control is my Freestyle Libre. I’ll put my hands up to not using it entirely properly (I very rarely do finger stick checks, which is definitely bad practice), but the few periods where I’ve been without a sensor have confirmed my suspicions – I don’t care enough about staying in control too do finger stick checks.
As long as it’s easy, I’ll do the things. If it’s beyond a certain level of hassle and I simply don’t bother. As mentioned, due to safety concerns I have been moved to a split pump/pen regime – this mostly works well, but on bad days I ignore the shot from the pen which screws up control for the next day or three…
What can we do?
My main take away from this experience has been the need for some joined up thinking and research in diabetes management alongside mental health issues.
There were several times I felt like I needed both areas of expertise in the room. Everyone was great, but it still feels frustrating to answer everything with ‘I can see that’s the right thing to do, but it’s not an option because diabetes/depression’. The use of my pump and Libre were and are absolutely key for me (despite flaws in both), although I’m sure it wouldn’t work as well for others.
I’ve definitely felt a lack of support on the mental health side, but that’s likely due to remorseless budget cuts rather than the people involved.
The time it took to get help was crazy. It was three month’s wait to get the clinical psychologist appointment which was fortuitously timed. It took 4-6 weeks (not tooooo bad) to get onto the ‘group CBT introduction’ course which was largely useless for me other than to get onto their books, and once they knew I was seeing the clinical psychologist however they were pretty happy to leave it at that.
I could have made a better decision at this point, but only in retrospect – I chose to try doing the CBT with my psychologist instead of dealing with someone new. I think I would have gained more by splitting the two, as I never really got my teeth into the CBT with the psychologist. Although that was partly due to me not being mentally ready.
In the end we decided I needed more help and I was referred to the ‘crisis’ team. Which took 3-6 months to get the first assessment – luckily I didn’t have any serious issues during that time (having got the surprise discovery of sharp things out of the way already).
By the time I saw the crisis team I was on a bit of an upward trajectory and they decided I would be best going back to the lower level service I had already been to and left, albeit with a ‘changeover’ period with a nurse from the Community Mental Health Team.
Frustratingly, I found my CMHT nurse to be very problematic for my anxiety, but I wasn’t in the right headspace to do anything about it, especially as my suspicion was that there wasn’t going to be much choice. It took another 3-6 months to sort out the two services disagreeing over who should be providing the care and then another 3 months to actually get an appointment to do CBT.
Unfortunately, CBT didn’t work for me, whether it was a problem with the person (I feel like I maybe needed someone a bit stricter), or me not being ready yet, I don’t know. I’m now off all the books, and don’t have the interest/will/desire to try again.
Something that would make an immense difference to me would be more ability to book things online, and better responsiveness to emails (though I appreciate the second one is unlikely to change without significant investment). My anxiety makes phone calls very difficult, and I avoid them wherever possible. While my brilliant sister has done a fantastic job of helping me out as regards ‘important’ phone calls, I still put off asking her for help if I’m in anything other than a good mood.
Little things like being able to book doctors appointments and request repeat prescriptions through an app make my life so much easier. But that app doesn’t (so far as I can see) let me book appointments with the hospital team, or even nurses appointments at the GP surgery.
A pump that the clinic team can access without a visit – save us all some time and just make the changes they want to try. It’s not very 21st century medicine, I know, but I really don’t understand this constant imposition of choice – I’m not a medical expert, they are, I’ll do what they think is best unless I feel very strongly.
I don’t have the brain capacity left over from surviving to care about the insulin to carb ratio my pump is currently on, I just want it to work. Obviously, what I really want is an artificial pancreas, but I suspect I’m a little way off getting one. (I’m unconvinced by the idea of a pancreas transplant as I’m far too used to having a pretty hardcore immune system and suspect I wouldn’t do well with it even more compromised!)
A big help that’s unlikely to happen any time soon is lots of money for mental health services so they can provide the support so many people need. Part of my reluctance to try getting help again is that I know there are people who are in greater need of the support. Oh, and not having the money to go private, of course.
Where does all this leave us? Or even just me? Well I’m getting on with getting on – avoiding long term plans cause they’re terrifying, but happy enough with short to medium term plans – especially if they involve my fledgling woodworking business or my various musical pursuits. I’m getting my head back in the game, even to the point I’m strongly considering asking about going back to pump only so I can more easily manage exercise (I’m never gonna lose the ~20kgs depression has added to my stomach if I have to snack constantly during exercise).
I’m not sure what other people can learn from my experience, other than that you’re not alone if you’re struggling with diabetes management – it’s not easy, and it can get you down. There’s lots of options for how exactly you manage your own diabetes – think about what would work best for you and see what tools are available.
Keep an eye on those around you – functional depression is a thing, just as much as functional alcoholism, and humans are very good at putting on a face to ease social situations. If you know someone with depression, don’t give up on them, but try not to over-do the ‘helping’ – a message out of the blue to say you’re thinking of them can mean the world (and has probably saved my life twice), while an *un*wanted visit can set anxiety spiralling. Replies to messages might take a while, but that doesn’t mean they’re not appreciated.
Stay safe, don’t panic if your control isn’t perfect, and be nice to people, you don’t know what they’re desperately trying to hide.